Metamorphosis 2: Scoliosis Warrior Part 2: Surgery and Road to Recovery

This is the continuation of the story of our daughter's road to recovery. It was written with the intent of helping patients and families of patients with scoliosis understand the process of preparation and recovery from a spine fusion surgery. Prior to operation, I also relied on testimonies and stories I could find online on how patients can cope better for the recovery. May this become a source of hope and inspiration too for her fellow scoliosis warriors.

“Courage is not the absence of fear. Courage is mastery over fear.”

6-months after the surgery, with Dr. Jose Martin Paiso.
By this time, Dr. Paiso confirmed that Kyla's spine have fused 100%

Living with Scoliosis Part 2 – The Surgery and Recuperation Period

After 5 years since diagnosis, we decided to finally proceed with the spine fusion surgery. First, it is important to partner with a spine surgeon that you trust and feel comfortable with. Kyla’s surgeon – Dr. Jose Martin Paiso is one of the best in this field of practice and he has been Kyla’s doctor ever since she was diagnosed in 2014. He knew the history and highs and lows of her fight with scoliosis. He is very thorough in explaining the options, transparent is sharing pros and cons of every decision, and respects that in the end, opting for a surgery (or not) is ultimately, a family decision. You can Google him to see his credentials.

Secondly, the patient and the entire family needs to be mentally, emotionally, spiritually and I would say, even physiologically ready. I will spend some time explaining this as I felt this is also a crucial step.

What do I mean by the above?

The primary caregivers – in our case, my husband and I - need to be healthy because the first few days after the operation will demand your time, patience and vigilance over several nights. You will be carrying out the instructions from the doctor on caring for and assisting the patient esp. on the road to recovery at home. I decided to take a leave of absence from my work. I cannot be effective in caregiving if I had my work competing for time and attention.

Mental and emotional readiness meant you have to be the source of strength for the patient. You have to be there to provide encouragement esp. in case they face depression and frustration. To be honest, we were also nervous about the whole thing. But we really had to overcome our own fears and focus on being strong for our daughter. Part of my mental preparation was to research and read stories of patients who went through spine surgery. It helped me to understand what they felt, what were their fears and frustrations, what was the recovery process entail, etc. Doing this helped to anticipate what to expect instead of second-guessing what to do.

Pre-Operation. Before the operation can commence, there will be several tests that will be required to ensure that the patient is in good health. These are scheduled several days before operation. The Pediatrician will need to issue a certification that patient is fit for operation and to secure this, the patient will need to undergo physical tests. This is the reason why I stressed physiological readiness. Kyla was checked into the hospital 24 hours prior to the operation. Some time within the day, there were pre-operation procedures administered as well. On the night before the operation, we had a pray over dedicated for Kyla, for the medical team and for the success of the operation. Special thanks to our friend, Virg Jose for sending over a voice recording of prayers. The surgeons also visited us the night before the operation to explain the procedure and what to expect after.

The Day of the Operation - April 25, 2019. At 5AM sharp, a team of nurses fetched us from the room. Her bed was wheeled into the holding area of the Operating Room complex while I was trailing after them. In the holding area, the team of doctors spoke to me to explain what will happen. Apart from the lead surgeon, there is another lady surgeon, the anesthesiologists, the neurologists, the head nurse and later, the pediatrician and the rehab doctor. Yes, it is a medical team. The anesthesiologists explained the very crucial “wake up test” protocol to Kyla. After suiting up with complete PPEs, I was allowed to be with my daughter until she was wheeled inside the operating room. I saw Dr. Paiso and the rest of the team, the operating table, the monitoring equipment for brain activity, the bags of blood for transfusion. I did not take a picture (or attempt to ask for one) but committed everything to my memory while silently offering a prayer. God will be in control.

At 6:45 AM, the anesthesiologists- Dr. Prodigalidad injected the first shot of anesthesia on her forearm and this will trigger sleep. After that, I was told when vitals are now stable, the general anesthesia will be given. Dr. Prodi told her “Good Night Kyla, we’ll see you later.” I was there when Kyla’s eyes closed. I went over to Dr. Paiso. By that time he was wearing his scrubs, ready for the operation. I was teary-eyed when I approached him and told him that we entrust Kyla’s care to him. He assured me that he is just an instrument of God’s healing. Amen to that.

I stayed at the operating room complex’s waiting area for most of the time, except when I had to eat. The operation will take 6-8 hours. My husband Alvin had to stay and look after our son, Kevin and they stayed at the hospital room. I prayed the rosary while waiting there and what I can clearly remember is the feeling of calmness and peace in my heart. The fears and nervousness were not there anymore. I knew God will be in control.

At 4PM, we were called into the OR office where Dr. Paiso relayed the news that the operation has been successful. I was allowed to join Kyla at the OR area where she has been resting. By then, there were still several monitoring instruments attached to her. I can imagine how uncomfortable it must be. I was there when she woke up and I called my husband so that he can go inside and see Kyla too. When she awakened, she told me she felt very thirsty and we have to give her sips of water from time to time. After few more hours, she was transferred back to the hospital room. I can imagine that she must be in pain and utmost discomfort but she never complained. She was never fussy or irritable. If ever she had difficulty, she took it in calmly and silently. In that moment, I knew our little girl had become a woman of immense strength.

This was taken few minutes before Kyla was brought into the Main Operating Room.
She was very calm and cheerful that early morning of April 25th

I was allowed to join her into the Operating Room Complex.
This was at the holding area while OR is being prepped.
I was also permitted to go and see the OR for a few minutes
although no pictures were allowed at that point.

2 hours after the operation.
She had to stay in the recovery room for observation.
She was provided with a heated inflated balloon blanket because she felt cold.

The Post Op X-ray showing the titanium rods and screws

Post Operation

Day 1-2

The doctors visited us early in the morning. For the first time, we saw her back where the doctor made the cut. It was very neatly sutured. We were taught how to help Kyla get up so that she doesn’t have to be lying on the bed all the time. There is a strategy to follow so that the patient can get up and lie down from and back to bed but she has to be assisted by an adult to do this. By this time she is encouraged to also turn on her side or sit up with angled position so that her back will start to gain strength. She is able to eat regular food already but with my assistance esp. when cutting food. There were no food restrictions. A caregiver (we call her Manang) was assigned to her - she gave sponge baths for Kyla. Manang is able to wash Kyla's hair without getting her off the bed. She taught me how to replace her adult diapers safely. By Day 2, a physical therapist assigned to Kyla came over to start strengthening exercises for her legs in preparation for standing up.

Sitting up by Day 2.

Kyla had to roll on to her side from time to time
to prevent back stiffness

Day 3-4

Kyla is now able to sit upright longer. The next drill was for her to stand up and walk few steps coming from a sitting position. She was allowed to do this with a walker. She was assisted to a wheel chair and we were able to have a short trip outside the hospital room. The PT also started to assist her in exercise that will strengthen the legs in preparation for walking. Family and friends came over to visit Kyla.

She is capable of eating on her own by day 3.

Preparing for the drill of standing up and walking few steps.

Day 5

She can now walk a few steps from her bed to the arm chair where she can take her meals and watch TV. For physical therapy, she is brought twice daily to Rehabilitation Gym for longer walking exercises with assistance. Her Dad accompanied her to the gym.

By Day 5, she was taken into the Rehab Gym for longer drills
in preparation for independent walking

She is now able to take a full bath with assistance

Day 6

She is now able to take a full bath in the shower with assistance. A plastic chair came handy so that she does not have to stand up the entire time. She continued her physical therapy at the Rehab Gym and the final test that will determine her readiness to go home is the ability to move up and down the stairs. There was a simple 4-step stairs at the gym where she is able to practice. She is able to nail this skill down without any musko-skeletal difficulty.

The Final Exam.
This will determine if she can be allowed to go home.

Day 7

We were cleared to go home after passing the test of being able to go up and down the stairs. We said goodbye to the nurses, aides and therapists at MMC 5F Circular and gave them tokens of our gratitude for being attentive and compassionate in their caring for Kyla. The long drive home was tricky because Kyla had to sit upright for more than an hour and the ride is bumpy, despite precautions by my husband to drive slower.

Home Sweet Home after 8 days.

Recovering at Home

It was a relief to be finally home where there is fresh air and better food choices. While Kyla was recovering, we set up another sofa bed in her bedroom and I slept there for several months until she is fully able to cope on her own. On the first few weeks, she is not able to get in or out of bed on her own. It takes 2 people to assist her for this.

She managed being able to go up and down the stairs, albeit slowly. We met with her Rehab doctor two weeks after the operation, and she was prescribed to start assisted home-based strengthening exercises. We had to do this twice daily and I created a daily routine for us to follow. Full-time caregiver/s is/are essential during this period because the movements are still controlled so as not to strain the recovering spine and muscles. From the time she wakes up, I must be ready to assist her out of bed and lead her down the stairs in time for breakfast. She would rest at the living room area for a while and then we start the morning exercise routine. We also spend 10-15 minutes at the front yard for some early morning sun and fresh air. Warm bath is prepared by mid-morning for which I will have to assist her for bath and changing clothes. We have a plastic mono-block chair kept at the bath area. Her wounds had to be dressed and replaced daily with fresh bandages as well.

The exercise routine is repeated in the afternoon. In between these periods, she will be mostly resting. We don't have a housekeeper and so I am able to attend to other household chores while she is sleeping.

Breath of fresh air and few minutes of walking around the yard

2x daily strengthening exercises following the routine
prescribed by the Rehab Doctor

Preparing for Independence and Getting Ready for School

When she was strong enough to move around longer and with the surgeon's clearance, Kyla and I started to practice how she will be able to manage self care tasks on her own especially as I prepare to go back to my work (around 8 weeks after operation).

Here were some helpful tactics:

Install a non-slip plastic chair at the bath area
The bath essentials should be located at a level that is easily reached while taking a bath
The entire home should be slip-proof for unwanted accidents
Choose clothes that can be easily be worn or removed
Items used often should be accessible or within reach
Spend some time to practice the movements
Movements should not be rushed; it is okay to move slowly
Practice proper bending of knees and turning while bending of torso is still prohibited

By July 2019 or 3 months after operation, Kyla was able to go back in time for her final junior high school year. She was equipped with a bag with built in stroller so that she doesn't have to carry a heavy load. She left all the heavy books at school and we bought another set for use at home.

We are also very thankful for the school administrators at St. Scholastica's College Westgrove for the many concessions they allowed for Kyla in order to make her transition back to school a smooth one even while she is still recovering strength. They provided her a low table beside her chair where she can put her school stuff at arm's reach. She was also allowed to bring a pillow as cushion for her back. At this point, she was not yet allowed to participate in P.E. or other strenuous activities.

Not Alone

When we decided to proceed with surgery, we prayed for it and put our trust that God will be in control. Our family/relatives, friends and colleagues, teachers and classmates also served as Kyla’s spiritual warriors. We cannot thank all of you enough for lifting Kyla and our family through their prayer offerings. Kyla has been healed of pain. Her self-confidence has been restored and despite a few limitations in strenuous movements, she is able to live her life fully once more.